My Great Strides Story
It’s that time of year again to join together, walk and raise funds to stop the relentless disease of cystic fibrosis! Last year, Team Fischer raised over $17,000 which was given to the Cystic Fibrosis Foundation. Based on the CF Foundation’s business model, $15,300 of our Team Fischer funds were given to research! The Foundation continues to receive the highest ratings for sound fiscal management amongst charity organizations, which demonstrates to me that they are worthy of our trust in using our funds appropriately to better my child’s life and future. Since last year, the FDA expanded usage of a life changing drug, Kalydeco, to include patients ages 2-5. It was an exciting day in the CF community for these young patients to start this drug that is ultimately targeting the root cause of their disease. What a wonderful game changer to their future! Fischer started a similar drug, Orkambi, in 2016 when the FDA gave their stamp of approval for patients ages 6 and older. His oxygen level increased, and he started to gain weight. In early 2018, Symdeko was FDA approved. It’s a new and improved variation of Orkambi. I’m anxious to see if Fischer will be switched over to this new drug.
Our recent concerns are changes that are most likely coming to the Affordable Care Act. The CF Foundation advocacy group is defending the bans on the preexisting condition limits and opposes the reenactment of lifetime maximum caps on insurance. We cannot allow high risk insurance pools to become the answer for care for Fischer. Fischer would not survive if those protections are lost. He has a number of pills that he takes each month, but 3 of the most important ones that help him breathe and digest food cost $33,000 per month. Fischer would meet his lifetime cap quickly. It’s another component to his disease that is scary, expensive and confusing.
Fischer’s journey in life since my last update has been filled with fun and scary adventures. Before he started first grade in September, Fischer developed a cough. After trying several different antibiotics with the cough worsening over the next month, Fischer’s CF doctor said that it was time to admit him into the hospital. Fischer stayed at Sanford Children’s Hospital in Sioux Falls for 6 days in October. He received IV medicine through a picc line that was inserted into his arm. We had several family and friends visit while in the hospital. His first grade teacher even visited from Rapid City. Fischer was able to finish his IV meds at home with the help of Home Health. Since that cough, Fischer’s health hasn’t been the same. Before he rarely coughed. Now a cough and sore throat are part of his every day. Fischer’s hospital stay touched the hearts of many. The support and love we receive was so overwhelming, and it reassured me that we are not alone in this fight. Two ranchers heard about Fischer’s hospital stay and his love of hunting. One donated a yak hunt in Buffalo, SD, and a Texas rancher donated a deer, javelina and pig hunt. Did you know that a 7 year old can get 7 deer tags along with 4 turkey tags at Walmart for $10 in Texas?! Crazy! In November, Fischer’s first ever hunt was shooting a yak. What an amazing experience! In December, we flew to Texas and stayed with a great family on their ranch where Fischer shot a pig, javelina and a monster buck. I was overwhelmed by the kindness of these 2 families, and I was grateful that Fischer could do something different and exciting after all the hours he’s put into treatments and going through uncomfortable and some painful medical procedures at such a young age. They gave us memories of a lifetime and made Fischer feel so special. Helen Keller who dealt with her own disabilities said, “Alone we can do so little, together we can do so much.” Her statement is so true! Fischer could not manage or overcome this disease alone. Along with the bumps we’ve experienced this year, it’s also been an inspirational year to see the support in the medical field and amongst family and friends who are fighting for Fischer and against his disease. Your donations are paving a path to a cure. I am optimistic of a long life for Fischer. Please consider donating to our cause. You can make a check payable to the CF Foundation and mail it to us or donate online. All donations will be given to the CF Foundation on behalf of Team Fischer. Until it’s done, Mark, Sarah and Fischer
P.S. Our team goal is to raise $20,000. Make sure to place your Team Fischer shirt by April 16th!
You can email me your order at firstname.lastname@example.org. We are forever grateful!